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Old 03-11-2010, 08:23 PM   #1
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Found out I proably have MS today and scared

Today I had my 2nd appoitment with my neuro and also had a MRI. He found small lesions on the cervical spine and in the brain. Each place he showed me explained why I would have symptoms in a certain area. He said since they werent really big or distinct he wouldnt say 100% MS but that he felt like it was the beginning stages and to come back for another MRI in 6 months. It was just really confusing cause then he said that it wasnt to the stage to treat yet but to just keep a eye on it.So do I tell people I have MS or what? The lesions are there and so are the symptoms. Do most doctors wait until a second MRI to make a definate diagnosis? He also did a EMG and said that looked good for now. Im just a little confused and scared. Im scared about the future. Im unsure about myself because here I am at 23 forgetting people and other things, tripping, having to stop what Im doing cause of dizzy spells and many other symptoms and Im not even sure if I have a offical diagnosis. He didnt really even explain MS or what to expect. He just told me to take Vit D and to call if any symptoms get worse or if new ones show up. Im just confused and scared so if anyone has any advice or could share there story about being diagnosed it would help.

 
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Old 03-11-2010, 10:34 PM   #2
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MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Found out I proably have MS today and scared

Welcome to the MS board. Other than a big maybe, how has your life changed in one day? Truth be told, if it is MS, you probably have had it and it never bothered you enough to worry. When I was 14 I dismissed my foot drop for teen awkwardness. But at 19 the good Lord used a 2 X 6 to wake me up.

Lesions alone do not necessarily mean you have MS. There are many possible causes that also leave lesions. Still, if it is MS, your life has just shifted gears. As to telling people you have MS, wait for your next MRI and a confirmed diagnosis. While you are waiting, read as much information as you can, spend time reading here on this forum, and keep a daily journal of your life and possible symptoms.

I had a good 20 years before I finally had to take disability full-time, but my life is as blessed and fulfilling as ever before. You might find that you have fair weather friend who will leave because of your diagnosis, but you will also discover friends with whom life-bonds will be strengthened even more.

Ms can only control your life if you allow it. For me, I have found that there are aspects about my MS for which I have no control. For those I lean fully on God and He has amply blessed me. I have found, however, that there are certain triggers which affect my MS and that if I can avoid or diminish their impact, I have control over my MS.

Learn to attune to your body and try to discover what triggers your problems. You are not alone in this new life. Many have come before you; many are walking the same path on which you now trod; you are certainly not alone!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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Old 03-12-2010, 09:03 PM   #3
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Re: Found out I proably have MS today and scared

I always recommend a second opinion. I asked my neuro if he would refer me to an MS specialist. I'm on the west coast, so I went to UCSF. They were the ones that confirmed the diagnosis. Also, they recommended starting medication. My first neuro did not. He recommended the wait and see what happens. For me, I decided to start Avonex. The medication offered for MS is a personal choice. Many don't take the MS approved drugs. In addition to medications available, many people manage MS by diet and lifestyle changes.

Good advice from MSJAYHAWK. Do some research on MS. Write down questions, symptoms, etc. If your not happy with your diagnosis or lack of, seek another opinion. Know that this board is a great resource. Everyone is very friendly...one big MS family. Life will go on for you most likely you will achieve all of your personal goals. I'm married, two kids, work full-time and run my kids all over town for their activities. Good Luck, come back here with any questions.

 
Old 03-12-2010, 09:50 PM   #4
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Re: Found out I proably have MS today and scared

Quote:
Originally Posted by msuracer View Post
Today I had my 2nd appoitment with my neuro and also had a MRI. He found small lesions on the cervical spine and in the brain. Each place he showed me explained why I would have symptoms in a certain area. He said since they werent really big or distinct he wouldnt say 100% MS but that he felt like it was the beginning stages and to come back for another MRI in 6 months. It was just really confusing cause then he said that it wasnt to the stage to treat yet but to just keep a eye on it.So do I tell people I have MS or what? The lesions are there and so are the symptoms. Do most doctors wait until a second MRI to make a definate diagnosis? He also did a EMG and said that looked good for now. Im just a little confused and scared. Im scared about the future. Im unsure about myself because here I am at 23 forgetting people and other things, tripping, having to stop what Im doing cause of dizzy spells and many other symptoms and Im not even sure if I have a offical diagnosis. He didnt really even explain MS or what to expect. He just told me to take Vit D and to call if any symptoms get worse or if new ones show up. Im just confused and scared so if anyone has any advice or could share there story about being diagnosed it would help.
Hi msuracer, I also was told I has MS, that wa a year ago. Since then I've been told I have Lyme disease, I been treating that for a year or so.

Can you share ALL your symptoms with us, MS, Lyme ETC is very hard to diagnose. Maybe we can help...

Roy

 
Old 03-13-2010, 08:25 PM   #5
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Re: Found out I proably have MS today and scared

Hi, I was diagnosed 6/08 via many ct', mri's and finally a spinal tap which indicated through certain proteins that I had it. I don't advocate the watch and see plan. If it is MS, it it better to start treating it so it will stop progressing. Bless you.

 
Old 03-13-2010, 09:52 PM   #6
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Re: Found out I proably have MS today and scared

MS is a disease in which the myelin the coats your neurons becomes degraded, so it becomes difficult for neurons to essentially send messages to each other, to create an action. (Myelin is a coating around your neurons that communicate via distances, and provide your neurons with nutrients and rapid communication). This is why it may become difficult to follow through with movements for people who have MS, because the messages that their brain sends are not always transferred into actions due to this degradation

 
Old 03-18-2010, 07:19 PM   #7
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Re: Found out I proably have MS today and scared

I don't have much to add other then that i have also recently been diagnosed and am in the early stages of the disease. I have a "handful" of lesions on my brain and spine. I can understand your fear and questions.

I have to agree with the others who say if you are not comfortable with your doctor's course of treatment, that you should seek other alternatives. In the past 2 years, I have found that if you don't fight for yourself and be your own advocate, you will just get lost in the shuffle. I was told more times then I care to count to come back in 6 months, or 3 months or your fine, its just carpal tunnel only to finally get someone to put all of the pieces of my puzzle together.

I would also suggest that you be careful about who you tell that you have MS (if you do). You will find that people will treat you differently and it becomes hard for people to deal with you as they normally did. Unfortunately I read the "to tell or not to tell" on the MS Society website too late. Obviously you would tell your family and close friends, but the more people you tell, the more explaining you have to do. I can't tell you how many times a day I hear "How are you doing" with this pitying sympathetic tone. While people mean well, it gets old when you are just trying to live life as normally as possible. Just something that you might want to give some though to.

Best of luck to you!

 
Old 03-24-2010, 03:05 PM   #8
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Re: Found out I proably have MS today and scared

Hi all,
I am usually on the thyroid message board but I'm having a lot of weird syptoms and I'm not sure if it is my thyroid. I was diagnosed with diffuse nerve damage some time ago. It was supposed to have been caused by diabetic neuropathy ( according to the neurologist). My blood sugar is under control though,and I have only mild pre-diabetes, if at all, so I'm not sure why the tingling and burning is getting worse. I now have this in my lips and tongue, along with a scalloped edge to my tongue. I'm weak and tired, have extreme brain fog and dizzyness- all of which could be thyroid. I had a nodule and hashimoto's and they removed part of my thyroid last year. I have had a couple of unexplained incidents in my life that made me 'seize up', I've had mononucleosis and I get constat 'electrical sensations' in my arms and legs. This has been attributed to 'trapped nerves' in the past but is pretty much constant these days. I have carpel tunnel in both wrists and tinnitus and hearing loss in one ear. All these symptoms could be explained by other things. The reason I am here though, on this message board, is that the neurologist said to me that my nerve scan suggested MS but it was more likely to be diabetes. Since then, i have been really careful with blood sugar control and my daily blood sugar readings are normal, but I keep having episodes of weird symptoms, and the burning and tingling ( which is why I went to him in the fiirst place) has gotten worse. Any thoughts or help?

 
Old 03-27-2010, 08:28 PM   #9
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Re: Found out I proably have MS today and scared

You will learn quickly to ask all your questions and clarify things when you don't understand. Don't be afraid to call the Dr. back and ask the things you're wondering. Everything I've ever been told/read says that you need to start medication asap. I have been on Rebif for 4 years and have heard it's the best. It doesn't take the MS away, but slows it down and prevents other lesions from forming (so we hope!). You'll have to give yourself injections, but you can do it! I'm a big needle wimp and I can do it. They give you an autoinjector and all you have to do is push a button. DO NOT WAIT 6 months!

 
Old 03-28-2010, 10:27 AM   #10
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Re: Found out I proably have MS today and scared

Hi, I experienced symptoms for 20 years before a diagnosis of MS in 2003. I spent years with every type of diagnosis. First, I would definitly seek the advice of another Neurologist. A good MS specialist will start you on some type of disease modifying drug treatment and help try to relieve your symptoms. I don't know what area you live in but the Scripps clinic in La Jolla CA is very good.

 
Old 03-28-2010, 11:49 AM   #11
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Re: Found out I proably have MS today and scared

Hi,
gammer2
I see that it took a number of years for a diagnosis. If you don't mind me, asking how old were you before a definitive dx? I have been going thru this for a couple of years and I am frustrated beyond end.

Thanks

Last edited by lild4; 03-28-2010 at 03:15 PM.

 
Old 03-28-2010, 05:31 PM   #12
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Re: Found out I proably have MS today and scared

I just wanted to say thanks to everyone who posted. Im not scared anymore. I know there will be times when life seems to be more difficult but Im ok with that because it makes me appreciate the small things alot more. Im going to be a strong person and Ive decided the only thing Im going to let MS change is my motivation. I am going to be more driven than ever to acomplish my goals. Im also going to find a MS walk near by and try to get other people to go and raise money. Over the past couple of weeks Ive been able to tell my good days from my bad days. Im going to take control as much as I can of my body and the first step is educating myself as much as possible about MS. My first question is what kind of exercises and how long are recommended to help MS? Ive been taking a pilates class and I think Im beginning to notice better control of my body. It doesnt make the tremors go away completly but it does seem to lessen them.

 
Old 03-28-2010, 05:48 PM   #13
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Re: Found out I proably have MS today and scared

Quote:
Originally Posted by msuracer View Post
I just wanted to say thanks to everyone who posted. Im not scared anymore. I know there will be times when life seems to be more difficult but Im ok with that because it makes me appreciate the small things alot more. Im going to be a strong person and Ive decided the only thing Im going to let MS change is my motivation. I am going to be more driven than ever to acomplish my goals. Im also going to find a MS walk near by and try to get other people to go and raise money. Over the past couple of weeks Ive been able to tell my good days from my bad days. Im going to take control as much as I can of my body and the first step is educating myself as much as possible about MS. My first question is what kind of exercises and how long are recommended to help MS? Ive been taking a pilates class and I think Im beginning to notice better control of my body. It doesnt make the tremors go away completly but it does seem to lessen them.
Hi, I'm sure you have heard "stretch till it hurts" or "feel the burn," but those approaches are counterproductive for people with MS. If you overdo it you can end up straining an already compromised muscular system, increasing pain and causing your body and mind to become overstressed, overworked, and overtired.

Always Check with your doctor...

I'm glad you sound more POS.

Roy

 
Old 03-29-2010, 02:05 PM   #14
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Re: Found out I proably have MS today and scared

Hi msuracer,

You asked at what age I was when diagnosed. Well after over 20 years of symptoms I was 52 when the MRI showed lesions. The doctor started me on Copaxone at that time. I switched to Betaseron about 2 years ago, the Copaxone had some side effects.

 
Old 03-29-2010, 02:26 PM   #15
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Re: Found out I proably have MS today and scared

Hi gammer2
thanks for your response. Actually it's lild4 that asked the question. I have been having symptoms and tests for a few years, I am mid 40's and the Dr says I am too old. All I know is that I am too frusatrated.
Wishing you well msuracer, and apologies for using your thread for my question.
lild4

 
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